Question

[Guest guest]

Karolyn -

Call the Center for Independent Living that is nearest you, which you can

find at the following website: http://www.ilru.org/jump1.htm. Once you've

found the phone number of the one nearest you, call it and the staff there

can tell you about local, state and federal funding that is available to

you.

Good luck,

Hillary Melechen

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

An honorable human relationship is a process, delicate, violent, often

terrifying to both persons involved, a process of redefining the truths they

can tell each other. It is important to do this because it breaks down human

self delusion and isolation. It is important to do this because in doing so

we do justice to our own complexity. It is important to do this because we

can count on so few people to go that hard way with us. - Adrienne Rich

Question

> I am " disabled " and we are moving in a year or so. Since we are " old " we

have decided that there is not great advantage to us owning our own home any

further and are going to be renting.

>

> I have talked to our son-in-law (our neighbor AND landlord to be ) about

making some adaptations to the home and being the great guy he is, he is

perfectly willing to do so. These adaptations include a walk-in shower and a

ramp to the back door for my scooter

>

> Whew.... with all that background info out of the way I will now get to

the question:

>

> Is there a grant for making these adaptations? Or where can I look to find

the information?

>

> Thanks in advance.

>

> Karolyn

>

[Guest guest]

I wrote a couple of months ago and never heard from anyone. I thought I

would ask again. I am 9 months post-op and for the last 4 months I've had a

skin

rash (bumpy but not red) on my face, neck and shoulders. Still losing my hair

too. I knew about he hairloss but have not heard anything about this skin

problem. Anybody know about this and what I can do? I keep wondering if I'm

not getting enough of something or I'm taking too much. I've been to two

dermatologists and my primary care. They are stumped and just tell me its not

related to the surgery. But they don't know squat about the surgery. Would

appreciate any advice.

Also, does anyone on this post-op board have Regency Blue Cross insurance?

My friend is trying to get the surgery but they tell her it is exploratory and

they make the decision on a case by case basis. I told her I would ask.

Kim

205/127

[Guest guest]

Hi Kim,

First of all, congratulations on your spectacular weight loss! Wow.

I don't exactly have an answer to the rash question, except to say

that I have noticed that my skin is more sensitive since the

surgery. I seem to get a mini-hive breakout at least once a day

which is very itchy and then goes away as quickly as it arrives.

It is annoying, more than anything else. I have considered taking a

nondrowsey anti-histamine like Reactine or Allegra, but it hasn't

bothered me enough to do this. I have not been able to identify any

triggers (like foods or scents) - it seems to come out of no where.

Have you changed your laundry soap lately or dryer sheets? What

about personal soaps or cleansers? Perhaps you have developed an

environmental allergy? You are nine months out and I don't know

where you live or what your seasons are like, but was there a change

from Winter to Spring, or Spring to Summer?

I have found family doctors and most dermatologists pretty much

clueless about skin things. Kinda makes you wonder why the pretend

to know anything.

This is probably an MGB no-no, but my Mother used to take a tsp. of

baking soda dissolved in cold water to relieve hives (and indigestion

also). I think it has something to do with altering the acidity of

your body - but I'm not a doctor and not even a pharmacist - so

please check with clos before you do anything.

Best,

Teri

Bay City 4/8/04

287/221/?

> I wrote a couple of months ago and never heard from anyone. I

thought I

> would ask again. I am 9 months post-op and for the last 4 months

I've had a skin

> rash (bumpy but not red) on my face, neck and shoulders. Still

losing my hair

> too. I knew about he hairloss but have not heard anything about

this skin

> problem. Anybody know about this and what I can do? I keep

wondering if I'm

> not getting enough of something or I'm taking too much. I've been

to two

> dermatologists and my primary care. They are stumped and just tell

me its not

> related to the surgery. But they don't know squat about the

surgery. Would

> appreciate any advice.

>

> Also, does anyone on this post-op board have Regency Blue Cross

insurance?

> My friend is trying to get the surgery but they tell her it is

exploratory and

> they make the decision on a case by case basis. I told her I would

ask.

>

> Kim

> 205/127

>

>

>

[Guest guest]

Kim, I have Regence/blue cross/blue shield. I have an appeal in a

few weeks. So far, they are stating that it is the only wls that

they dont cover because it is experimental and investigational. They

are also saying that I didnt jump through enough hoops. Like doctors

care for a year: but I see my doctor every three months and saw a

dietitian for more than 6 months, etc.

I also had bumps in my hair. But I take Borage oil, fish oil, and

flax seed oil. Dont know if this helped or not. I also was

extremely itchy. My hands are itching now. No rash or anything, but

it was bad. Mostly it seems to be gone now. Good luck

Anne Hansen

Medford, Oregon

1/26/04

> I wrote a couple of months ago and never heard from anyone. I

thought I

> would ask again. I am 9 months post-op and for the last 4 months

I've had a skin

> rash (bumpy but not red) on my face, neck and shoulders. Still

losing my hair

> too. I knew about he hairloss but have not heard anything about

this skin

> problem. Anybody know about this and what I can do? I keep

wondering if I'm

> not getting enough of something or I'm taking too much. I've been

to two

> dermatologists and my primary care. They are stumped and just tell

me its not

> related to the surgery. But they don't know squat about the

surgery. Would

> appreciate any advice.

>

> Also, does anyone on this post-op board have Regency Blue Cross

insurance?

> My friend is trying to get the surgery but they tell her it is

exploratory and

> they make the decision on a case by case basis. I told her I would

ask.

>

> Kim

> 205/127

>

>

>

[Guest guest]

it very well may be an unrelated skin condition. if you have been to

specialists and your pcp.... surely you have had bloodwork. if you

have not ...demand that someone send you for bloodwork! but if that

is all ok, you may just have a skin problem. seek a second

dermatological opinion. good luck.... how miserable!! be well

cs in va

> I wrote a couple of months ago and never heard from anyone. I

thought I

> would ask again. I am 9 months post-op and for the last 4 months

I've had a skin

> rash (bumpy but not red) on my face, neck and shoulders. Still

losing my hair

> too. I knew about he hairloss but have not heard anything about

this skin

> problem. Anybody know about this and what I can do? I keep

wondering if I'm

> not getting enough of something or I'm taking too much. I've been

to two

> dermatologists and my primary care. They are stumped and just tell

me its not

> related to the surgery. But they don't know squat about the

surgery. Would

> appreciate any advice.

>

> Also, does anyone on this post-op board have Regency Blue Cross

insurance?

> My friend is trying to get the surgery but they tell her it is

exploratory and

> they make the decision on a case by case basis. I told her I would

ask.

>

> Kim

> 205/127

>

>

>

[Guest guest]

Have you tried jello puddings or yogurt maybe? I used to be able to

do puddings followed with water or milk to help get it down.

Lisbeth

Philadelphia, PA

[Guest guest]

Hi Penny,

Sorry to hear that you are having

trouble. It really sucks to get cravings with this condition, as most of

the cravings we all get are for things we probably can’t eat

anyways! My craving is pizza – I can’t wait! Lisbeths

idea of pudding is a great suggestion. Give that a try. Otherwise,you

could try those really good (and probably a little $$) frozen (solid) treats

such a fudgsicle. This may be a better product as it is not going to be

an entire spoonful trying to go down, only what melts in one pass!

Thankfully, me and ice cream get along well, if I take it easy! It would

difficult to do my job without being able to sample out new products!! (Hence

the email address!)

Good luck in your quest for tasty sugar,

Penny!

PS – I am

going to give Bianckas dh Edwin a few more trys this weekend, and will be sure

to let everyone know asap if I get any news! Have a great weekend

everyone!

[Guest guest]

Penny, can you get a Chocolate Drink? It's sweet

enough to maybey satisfy your craving. I know it will

go down - I use them to calm my spasms and heartburn.

Or how about yogurt. I seem to be able to get that

down without a water chaser.

=====

Carol (aka Carol_in_VA and GrnEyesVA)

....If life gives you lemons, make lemonade...

but if life gives you limes, make margaritas!!

[Guest guest]

Here is my phone number.

+++ Attachment: No Virus found

+++ Bitdefender AntiVirus - www.bitdefender.com

[Guest guest]

Dear PNWB,

Does anyone know the address for the chat group for pregnant

bandsters. I would like to find some information. If my memory serves correct we

had a

pregnant bandster not that long ago. Thanks for the help.

[Guest guest]

2 recommendations:

1. Dr. ZalZal -- Children's Hospital in DC (he also has

satellite offices in Laurel, Rockville, Fairfax).

2. Dr. Schessel -- Washington University Hospital --

DC (he also works out of Children's Hospital/DC one day a week).

I would highly recommend both of them. ZalZal performed 2 surgeries

on my daughter (age 10 -- first surgery at age 7) but recommended

Schessel to us for her reconstruction as ZalZal felt that Schessel

was better qualified for the particular procedure she needed.

Email me if you would like more details.

Candy

[Guest guest]

Hi,

My daughter has had 2 ctoma removal surgeries and 3 sets of tubes. The

first two sets of tubes were put in by Dr. Bahadori (see below); the

rest of the surgeries were performed by Dr. Zalzal of Children's

National Medical Center, D.C. He's the head of otolaryngology at

Children's, and although he can be a bit gruff at times, he's definitely

knowledgeable and we've been *very* pleased with him.

Our regular D.C.-area ENT is Otolaryngology Associates, specifically Dr.

Bahadori, who discovered the ctoma in our then-4-year-old daughter in

spring 2003. What I liked best about Dr. Bahadori, who has an

*excellent* bedside manner, was that he told us up-front that, though he

was comfortable with performing the ctoma removal surgery himself, he

encouraged us to find a surgeon who was more specialized in ctoma.

Other doctors we've had favorable experiences with from Otolaryngology

Associates are Dr. McKenzie and Dr. McBride, who are not pediatric

specialists like Dr. Bahadori is. I highly recommend this practice

group (the whole family goes there now for various reasons, not all of

which are ctoma).

We saw Drs. McBride and McKenzie before seeing Dr. Zalzal, and all

agreed on the course of treatment. Further, Dr. Zalzal was spoken of

very highly by Dr. McKenzie.

The Children's website is www.cnmc.org, and Otolaryngology Associates is

www.otolaryngology-assoc.com/.

Best of luck! You're in the right place for help.

-Jeff.

___________________________________

QUESTION

My question is whether anyone has had a good experience

with an otologist in or near the Washington D.C. area. Our

7 year old has had 3 sets of tubes has just been diagnosed

with a chol. We are considering going to s-Hopkins for

a second opinion to be thorough. What other criterion should we be

looking for, other that the doctor having

the special training as an Otologist.

[Guest guest]

I would love to know the answer to that question, let me know if you find

out!

[Guest guest]

Good point! I'll bet he experienced all of that and more, while he was

afflicted with erroneous " science " .

> Recently in the news I saw where a man in California was told after

> something like ten years that his original diagnoses of having HIV

> was wrong. I wonder if during these last ten years he was

> getting " treatment " from a doctor and what were his number counts

> during this time. Was he taking antivirals? Did he ever experience

> low tcell counts or hight viral loads? Did he change drugs during

> this time due to " no longer working " ? A case like this can help in

> the courts I would think

[Guest guest]

Hi Evita -- here's my "take" on spasms... this is a post that I have saved and I copy and paste it from time to time for those who haven't seen it before. Some of it won't pertain to your situation, b/c I originally wrote this when people were coming to the group saying they had "heartburn" and antacids didn't help, so I wrote this to both explain that in many cases their chest pains are NOT acid-related, and also to show the various things that can help the pains:

Chest pains, heartburn, acid reflux, spasm pains, NCCPs.... what the heck is all of this stuff anyway????

(aka: Debbi's Dissertation on Dysfunctional Dysphagia Diagnoses)

Here's some info I've put together on differences between "heartburn" and the "chest pains/spasm pains" that are related to achalasia. The official medical term that I've found for the "spasm pain" is "NCCP" or Non Cardiac Chest Pain. There are multiple terms used for "heartburn" including: acid indigestion, acid reflux, GERD/GORD, etc.

In my pre-achalasia days, I would have "indigestion/heartburn" once in a while (after a particularly large, fatty, acidic meal, etc.), maybe once or twice a year. I would have that nasty acid taste in my mouth when I burped, and a hot/burning sensation in the area of my breastbone. While not particularly comfortable, it wasn't an excruciating, debilitating pain, and taking some Tums or other antacid would neutralize it and both the taste and the discomfort would go away.

When I had my first NCCP, I had been having problems swallowing for a few years but hadn't yet been diagnosed with anything, and I had no clue that the pain was related to my swallowing problems. I thought the pain was some gawd-awful gas pains -- felt like something was stabbing me from the inside out! The pain seemed to start in the ribs and almost squeeze my chest with searing pain that seemed to shoot up into my neck, too. (note: everyone can experience NCCPs in varying degrees and in various parts of the body, including stomach, chest, shoulders, neck, back, jaw, tongue, teeth, and roof of the mouth.) I lived alone at the time, and I drove to a convenience store and bought three rolls of Rolaids and ate two whole rolls. That didn't have any effect at all, and it took a couple hours for the pain to go away.

Another time, I have a distinct memory of standing in the kitchen holding onto the countertop and just WAILING at the top of my lungs because it hurt so bad, and my knees buckling from the pain. My wailing turned into one big repetitious prayer: "Please, Lord, Please, Lord, Make It Stop, Lord, I Can't Take It Anymore, Lord, Please, Lord, I Need You To Please Help Me!" over and over and over again while sobbing. This was almost a decade ago and I don't know how long it went on, but I'm thinking that it was well over an hour of that constant wailing. Boy, those were the days, huh? ;o)

For people whose doctors believe that NCCPs are an "atypical" (not normal) symptom for achalasia patients, point them in the direction of this informal poll here on our group: achalasia/surveys?id=1037310

The poll is now closed, so who knows how many more would be added to it if it were still accepting votes. If you scroll down to the end, 38 people reported that they have these "spasms", and 5 people reported that they don't have spasms. So out of 43 people who answered the poll, 88% have spasms and 12% don't have spasms. Doesn't sound like a "rare" or "atypical" symptom, does it?

In another poll ( achalasia/surveys?id=1011383 ) of people who went to the Emergency Room due to extreme chest pains, 2 were given intravenous Valium, 3 were given Demorol or other narcotic injection, and 7 were given no treatment whatsoever.... isn't that sad? 58% of the people who were in such severe pain that they went to the E.R. were given NO TREATMENT at all!!! That is SO unnecessary!!!!

Here's some info that I copied from an old post of mine -- if your doctor will bother to do some simple web searches, he'll see that calcium channel blockers, nitroglycerine, and anti-depressants are all documented ways to treat NCCP in people with esophageal disorders! Maybe if you print it out and show it to him, he'll be willing to offer you some help in dealing with this.

=============================================

Here's some basic info that I've posted in the past -- different things work for different people, so it's basically just an experiment to find what works for your own particular situation.

Here are some different coping methods to try:

-- Swallowing something warm or something cold (in my case, I chug warm --not hot-- water as fast as I can).

-- CCB medication (calcium channel blockers) -- when I'm having NCCPs, I prick the shell of a nifedipine capsule and squirt it under my tongue. It absorbs into the bloodstream under the tongue (this is called a "sub-lingual" medication, meaning under-tongue) and relaxes smooth muscle tissue (which is what the esophagus is made up of). You can also just swallow the capsule, but since we have trouble swallowing in the first place, I've found the under-the-tongue method works best (then you just swallow when you've held it there as long as you can and your saliva requires a swallow). Unfortunately, it can also lower your blood pressure (usually only a problem if you already have low BP to begin with) and cause a headache afterwards -- some people experience this, some don't. CCB's can also be tried in the "slow release" formula as a preventative to having NCCPs start in the first place.

-- Nitroglycerin medication -- works in much the same way as the CCB mentioned above, and can also be taken sublingually for fast relief.

-- Certain anti-depressant and anti-convulsant medications -- some people don't have NCCPs when on these types of medications, believed to be a function of the medicine's effect on serotonin in the brain (antidepressants such as Nortryptaline, Amitryptaline, Imipramine and Trazodone have been studied; Neurontin is being studied in a similar way for "phantom limb pain" in amputees, etc.) People in the group have had luck with Paxil, Ativan, Nortryptaline, etc. The dosage needed in this case is generally lower than the dosage that is normally used to treat depression.

-- L'Argnine supplements -- some people have found these relieve NCCP symptoms.

-- If symptoms are debilitating and none of the methods above help, you may need a narcotic pain reliever, but definitely try all the options above first, b/c if you're on narcotics you can't drive, work, etc., and the vast majority of people can find relief in a way that doesn't involve narcotics.

=============================================

In the last few years I've taken three different drugs that affect serotonin (one of which isn't considered to be an anti-depressant medication, but which does have a serotonin effect nonetheless); any time I was on one of those drugs, my NCCPs have either disappeared entirely, or been nearly eliminated. And each time I discontinued a serotonin-effect drug, the NCCPs started up again within a month's time. One member here who was in the E.R. repeatedly for debilitating NCCPs finally had a doctor prescribe a low-dose daily antidepressant; her NCCPs have been eliminated.... no more pain, no more narcotics, no more trips to the hospital.

There are soooooooooooo many things that can be done to reduce NCCPs, but doctors don't even bother to TRY to find a solution for us. I say let THEM curl up in a fetal position making plea-bargain deals with their Maker at 3:00 in the morning just ONCE, and you can bet your booty that they'll find a solution REAL fast!!! :oP

Debbi in Michigan, aka Pepto-Deb

Question

Can anyone tell me briefly what helps against those spasms of the oesophagus?I live in Belgium, have had achalasia since about 4 years now and I can't cope with these pains anymore. My doctor thinks it's a psychological problem, my GP gives me meds that don't help, I don't know what to do anymore.For the rest : no troubles eating, sleeping, don't have to cough a lot.Had my dilatation 4 years ago.Thanks for the answer!EvitaAntwerp, Belgium

[Guest guest]

Evita wrote:

> My doctor thinks it's a

>psychological problem, my GP gives me meds that don't help,

We hear that a lot. A lot of doctors are unaware of how bad the pain can be

or that it may not be caused in the way they think it is. You may have to

educate your doctor about this.

notan

[Guest guest]

This appears to be a new dual uptake inhibitor.

http://www.cymbalta.com/?ccd=cymbalta307

Of course if you do a search you'll find all the negatives about it as well.

High on the list seems to increased risk of suicide.

Barbara

question

>

> Anyone know anything about cymbalta??

>

> Thanks for any info!!!

>

>

[Guest guest]

You will find the best directions here.

http://www.dryandstore.com/?BISKIT=974556287 & CONTEXT=cat & cat=37

Let me know if you need more help but you should put your processor in the Dry &

Store nightly.

Alice

>

> Can somebody trell me about dry & store.  How do I use it?  When?  How

often?  

>

> Trish

>

[Guest guest]

It's recommeded for use nightly, Trish. Even though it may be dry now in your

area, the processor lays next to your head all day and the body eliminates

moisture and heat. I live in New Mexico which is the desert. The relative

humitity is normally in the range of 10 to 20% but I use the Dry and Store every

night as recommended by my audiologist. You might ask your audiologist about

this too.

Alice

>I figured Sunday night I'd do my first Dry & Store but I can't see why I'd

have to do that every night. Trish>

[Guest guest]

Trish I live in RI which is a nice 3 hour train ride from NYU and around the

area the moisture changes very fast. I use my dry and store faithfully every

night except when I am traveling then I will use the splash box that the 3G came

in. It has saved i believe my 3G from being sent out. I am also a heavy sweater

so the dry and store comes in very handy. All three audies that I have had

including the one at NYU CI center have recommended the dry and store. It can

extend your battery life of your 3G also. From May to Nov I have to change the

dry brik monthly because of the humidity and the rest of the time it is every

other month. I am sure that there are other NYers who will chime in on this

also.

Snoopy BICers

============================================================

From: Trish <palhub@...>

Date: 2004/10/02 Sat AM 08:40:41 EDT

Subject: question

============================================================

[Guest guest]

If you have the good dry and store, no since in not using it

All I've ever had is the silver case that came with the 3G and it's

served me nicely; but I don't sweat a lot and the humidity here

isn't real bad.. I may just purchase one to see if it does make a

difference on the battery life.. I suppose that even though we don't

notice the moisture there's really more than meets the eye,and your

battery compartment, mic and contacts could potentially become

damaged if not properly dried, but, if you do forget to use the

global dry n store it's not going to be a matter of life and death.

<smiles>

Off to my grandsons soccer game. Hope you all have a great weekend.

Hugs,

silly MI

In , lisa munson <lisamunson@v...> wrote:

> Trish I live in RI which is a nice 3 hour train ride from NYU and

around the area the moisture changes very fast. I use my dry and

store faithfully every night except when I am traveling then I will

use the splash box that the 3G came in. It has saved i believe my 3G

from being sent out. I am also a heavy sweater so the dry and store

comes in very handy. All three audies that I have had including the

one at NYU CI center have recommended the dry and store. It can

extend your battery life of your 3G also. From May to Nov I have to

change the dry brik monthly because of the humidity and the rest of

the time it is every other month. I am sure that there are other

NYers who will chime in on this also.

>

> Snoopy BICers

> ============================================================

> From: Trish <palhub@o...>

> Date: 2004/10/02 Sat AM 08:40:41 EDT

>

> Subject: question

>

> ============================================================

>

>

>

>

[Guest guest]

In a message dated 10/2/2004 2:49:21 PM Alaskan Daylight Time,

palhub@... writes:

> I'm going to do the dry & store tonight. Thanks for explaining it to me.

> My audi said to use it 2 or 3 times a week. I was kind of afraid that

> 'overheating' the 3G would hurt it, but it sounds like the other way around.

>

I didn't realize that the dry & store actually is a heat source..

interesting. The little one I use for my hearing aid is just some crystals that

remove

moisture.

But as long as it is not a high heat it doesn't seem like it would hurt

anything.

Pam

[Guest guest]

In a message dated 10/2/2004 3:49:22 PM Pacific Daylight Time,

palhub@... writes:

My audi said to use it 2 or 3 times a week.

It depends on your location, where I live, same " rule " 2 or 3 times a week.

I wouldn't really worry if you missed a day, if this is your audie

recommendation. I understand if humid is high, or one perspires alot, it is

common

sense to do it daily.

Lee

[Guest guest]

Trish,

If I had the Dry n Store, I would use it nightly. Wont hurt it a

bit. Hmmmm, maybe someone has a spare one......

*---* *---* *---* *---* *---*

" My parents didn't want to move to Florida, but they turned sixty, and

that's the law. "

--Jerry Seinfeld

& Gimlet (Guide Dawggie)

Portland, Oregon

N24C 3G 8/2000 Hookup

rlclark77@...

http://home.comcast.net/~rlclark77/

[Guest guest]

In a message dated 10/3/2004 6:50:36 AM Alaskan Daylight Time,

palhub@... writes:

> Hi Pam,

> I think your talking aobut the silver box. I thought that was the dry &

> store too. It isn't. d & s is a unit that plugs in that's about the size of a

> jewelry box. It has 100 degrees of heat for an hour period to dry it out. It

> did seem to clear the mic, which was dimming out. I'm not going to do it

> every night though. I have to see how often it actually needs to be done. My

> electric bill's in jeopardy.

> Trish

all true and makes good sense! Thanks for the clarification..

I appreciate it!

Pam